Where Am I? -> WP 2 - Building Results Repository -> WP2 Details
Direct link to this page: http://www.EUROlinkCAT.eu/wp2-buildingresultsrepository/wp2details

The work package will proceed in the following way:

  1. Ascertain individual registry capacity to link existing administrative/clinical/educational/prescription data to their congenital anomaly data extracted from the EUROCAT Data Management Program (EDMP). For each registry:
  • Catalogue and document the datasets available for linkage, including regional or national coverage, years included and the availability of children without anomalies (controls) [All registries, UU]
  • Produce meta-data/ data dictionary to describe these datasets. This includes a description of the dataset and variable names, variable descriptions/ definitions, coding instructions/ values (in English) [UU, BIOMED]
  • Conduct an initial scoping exercise to assess the quality of the data to be linked (Quality Assurance) i.e. for study
  • inclusion/ exclusion criteria purposes and for creating derived variables we need to ascertain if the variables are mostly complete or incomplete. [All registries, UU]
  • Upload all the above documentation to the membership-only section of the website as individual WP leaders using linked data need this information for developing study protocols [UU]
  • Develop a detailed data management plan conforming to all EU and national legislation.
  • Oversee local registry ethics/research governance permission for conducting linkage studies [UU]
  • Apply for ethical permission at Ulster University to hold the EUROlinkCATCentral Results Repository [UU]

 

  1. Standardise linked data across participating registries (lead partners UU, BIOMED).
  • Create a common data model (independent from study protocol/study design). This task ensures that all variables/proxy variables are standardised across all registries [UU, BIOMED, QMUL]
  • Develop rules for each registry to generate derived study variables from the existing data [UU, BIOMED, QMUL]
  • Develop rules for each registry to implement different study designs for example according to whether children without anomalies are available as controls [UU, BIOMED, QMUL]
  • Agree on the common model with registries to ensure correct interpretation of local variables [UU, all registries]

 

  1. Create the linked datasets needed for the protocols of WP3-6 (lead partners UU, QMUL).
  • Create registry-specific syntax scripts to derive study variables, to implement study designs, and to run the pre-defined analysis for each WP study. These will be replicated by another individual for quality assurance [UU, BIOMED, QMUL]
  • Registry data providers run the registry-specific syntax scripts using STATA, SPSS, or equivalent program to generate the required output aggregated tables and analytical results for WP3-6 analysis [All registries]
  • Each registry/ data provider produces a data linkage report for quality assessment. This includes verification and validation of the derived variables/ data transformations, the methodology used to link cases in the different datasets, and matching success [All registries, UU]
  • Develop a set of DQIs for the Central Results Repository to assess data quality i.e. to compare registries against the EUROCAT average [UU, QMUL]
  • Upload all the above documentation to the membership-only section of the website for internal documentation [UU]

 

  1. Develop the EUROlinkCAT Central Results Repository and associated website (lead partners BIOMED, UU)
  • Build the website and install a CMS on the website [BIOMED]
  • Develop a Central Results Repository for holding the registry aggregate output tables and analysis results (such as Odds Ratios and adjusted Odds Ratios) to be used in European meta-analysis [BIOMED]
  • Implement DQIs in the Central Results Repository for comparison of registries to the EUROlinkCAT average [BIOMED]
  • Create interactive web tables hosting aggregate tables: detailed information will be available on a membership-only section of the website, whilst more aggregated data will be available on the public section of the website [BIOMED, QMUL]
  • Provide text for the website relating to Central Results Repository [BIOMED, UU, QMUL]
  • Provide appropriate standard operating procedures documenting the Central Results Repository resource i.e. definitions, processes, activities, data security and data archiving [UU]
  • Provide linked aggregate data (tables or analysis results) to other WPs to assess mortality, morbidity and educational outcomes of children with congenital anomalies [UU]
  • Co-ordinate external data requests [UU, QMUL]